Canadiangirl73

Thanks for sharing. Have thought about many of those points over these past two years.

So sorry you are experiencing this. From what you are describing, it sounds like you are having couplets and triplets )sinus beat, then 2 or 3 PVCs in a row), but to be really sure they have to be captured by a Holter or event recorder. I had my share of palps and only found out I was having bigeminy (and could put a name to it!! - so sinus beat, PVC, sinus beat, PVC, etc.) after it was captured on a monitor. I found if I drink plenty before I get up to be helpful. Have you talked to your physician about this? BTW, I was told those a benign.

I take Ativan and Metoproplol (another beta-blocker) with no issues. Was also on Ativan when was given Florinef to try. One suggestion: I wouldn't take your benzo at the exact same time you start your beta-blocker as the latter can sometimes cause drowsiness and lightheadedness while your body gets used to it.

Thanks everyone for your replies. My dysautonomia onset was nearly two years ago and I used to have it a lot a the beginning, but then it went away... I do have pooling issues but wear an abdominal binder and waist high compression stockings. Bren, as you mentioned, it is more of a tightness/wringing sensation that comes with blood pooling. I am on Metoprolol and Ativan and have been since November 2011. it doesn't seem to get more intense with activity or positions. I really don't know... It is always with me. Soooooo annoying.

I get this too. I now have Raynaud's, didn't pre-dysautonomia. I even get it in warm settings, like in the bath tub. My fingers will be white from knuckle to nails and I can clearly see a line: normal colored skin, white skin and grey nails. Explanation I was given as t why it happens in warm environments is that I get excessive pooling in some parts of my body, so my body shunts blood from extremities to send it where it is vital. Not dangerous I've been told, but unsightly!

Thanks Tobiano for your kind words. My vitals are as usual wacky, my BP mostly (super low or super high). My HR is also pretty stable in a POTS fashion of course. I really don't know what to do. This is unbearable at times, but what's disconcerting is the fact that it is not relieved when I lie down. It always did in the past, so I can't help but wonder if it is something other than POTS.

So I have been having breathing difficulties for over a week now and am getting concerned. As usual, my lungs feel like they're made of steel and can't inflate to their fullest to relieve me from this air hunger. This doesn't resolve whilst lying down, and actually was far worse when recumbent this past Saturday. I entertained the idea of going in to get checked out, but didn't since my ER experiences were always disastrous (lack of knowledge of physicians and being labeled 'anxious'). Has anyone suffered from this for this long? Has anyone been plagued by this from the moment they wake up until they go to bed? I am having an echocardiogram this Wednesday and it couldn't be any sooner! In the interim, what should I do My GP is on maternity leave and my cardiologist isn't helpful. Thanks!

I had the exact same feeling happen to me a few times. Have you ever checked your pulse when this happens? In my case, it was really slow when I took it, so I suspect it dipped even lower and woke me up.

I get this every now and then, but I'm getting it quite a bit lately. Seems to happen mostly after being upright and having a narrow pulse pressure, but not always. I feel as if my lungs are made of steel, cannot inflate properly, so I can't take a deep enough breath, one that would allow me to get rid of this air hunger. This is one of my worst symptoms. When my dysautonomia started almost two years ago, my GP gave me home oxygen even though my oxygen sat was fine according to the oxymeter. Home oxygen did nothing, so my guess is that signals get lost somewhere between the brain and the lungs. Small fiber neuropathy???

I wonder if anti-cellulite creams would have the same effect since caffeine is one of the main ingredients.

Joann, I'm like you. I can walk on a flat surface for a long time but can't do inclines. My driveway is on an incline but I never get that sharp pain while getting up it, just chest pressure, as if my heart will burst. Nasty... I will try getting up the whole 14 steps once more to see if it happens again. Thing is, when I climbed them this past Tuesday I had been extremely active and on my feet for 3 hours straight. Maybe I pushed the envelope too hard? They never ruled out a possible blockage though. My GP and I are still working on getting that done.

The burning was one of the first symptoms I had when dysautonomia struck. I still have it. I recently had a complete eye workup (scanned my peepers through and through) and in the end was told I have SEVERE eye dryness. The ophthalmologist told me eye dryness can cause burning, photophobia (light sensitivity), blurry vision, etc. I now put lubricating eye drops several times a day. I helps. Maybe you can try some.

I climbed a flight of stairs (14 steps in a row) for the first time in nearly 2 years last night since my young daughter really needed my help. I usually do 6 steps vertical, then do the rest on my bottom. Going down is not an issue; I go down standing. So while I was climbing as quickly as I could (not too fast), I got this very intense sharp pain in my left arm when I was on step 9 or 10. Do you guys think this is POTS related or something else I should get checked out? Pain comes and goes with no rhyme or reason today still. No triggers today, but lingering intermittent pain. Any thoughts? Has this happened to anyone else?

Hi there, I'm so sorry you're having doubts about your heart. I'm not a doctor so I don't know if it is indeed enlarged. Are they both x-rays? Or is the bottom one from a ct-scan? If it is the case, organs won't have the same appearance depending on the means used to obtain images. Also, when one has HF, there are other symptoms. Sure, they overlap with some POTS symptoms (shortness of breath, especially), but having had transient viral cardiomyopathy (resolved within a week's time) that coincided with my dysautonomia onset I can assure you that the SOB I experienced back then and what I get now felt very different. Is there any way you can go back where you went and ask for the written report pertaining to those tests or talk to someone there?

What are the odds is right? I can't believe you posted this as I have lumps in my left breast for which I will be getting an ultrasound tomorrow afternoon. I totally understand and can relate. We can just hope for the best!!! Keeping my fingers crossed.

Enid, What has been your experience with this doctor? I would like to know. Could you please PM me if you don't want to discuss the particulars on the forum?

I have a good long term memory but terrible short term. I must make lists for everything.

YES! I get terrible nightmares (always involves death or my heart) when I feel worse. They are so vivid that I sometimes can't remember if it was truly lived or not. For instance, I had a dream that involved chest pains and didn't know if chest pains were real and I incorporated them in my dream or if it was just a dream about chest pains. Are you following me?

It could be a vitamin K deficiency, anemia, hypothyroidism, blood clotting disorder, etc. Some meds can also change how the blood clots (lengthen clotting time, etc.). I know antidepressants are one of them. I think she should go back to see her doctor and request they run more tests.

I feel like I'm taking up a lot of air time today, but this post will be short. Has anyone ever had chest pains that became so strong they felt as if someone was wringing out their heart and caused your hands to get cold and clammy at the same time? This happened to me this past Thursday and I'm wondering if it's a POTS thing (I now tend to chalk everything up to dysautonomia when it can be something else). Thanks!

I touched on it in another one of my posts, but decided to make it a separate one. So about two weeks ago, I was in to see my GP. We talked about my arrhythmias and the EPs I have seen about them. So last Summer I traveled about 7 hours to see a POTS specialist/EP who told me I had two separate issues: arrhythmias and autonomic dysfunction. He had MANY tracings of mine at his disposition and told me an EP study was warranted because they just weren't normal. In his eyes, I had too many arrhythmias, too varied and too frequent. He wanted to perform the study at a later appt to which I wasn't able to attend since I had pneumonia and my body didn't like the first trip. When I came back from that first one I was left with profound hypotension and dangerously narrow pulse pressure. Given all of this, my GP decided to call upon one of the EPs I had seen in my city. Well, he told her he didn't share the opinion of the other doc a few hours away from here, told her my arrhythmias didn't last long enough to warrant an EP study and (drumroll).... that I should go see a shrink!!!! I was speechless. I just couldn't believe that this doctor was still hung up on this anxiety bogus diagnosis. I had numerous tests that prove I have dysautonomia and all psychological tests' results ruled out anxiety. The two psychologists I saw told me I was frustrated by the lack of adequate care and knowledge from physicians. The POTS specialist also told me all POTS patients he had ever seen were told they were crazy and anxious which isn't the case. He told me most docs don't understand the condition well and the fact that we are often in sympathetic overdrive, so all these other docs default to an anxiety diagnosis. I am soooo tired of this. Obviously, I made tons of progress since the onset of this condition (how to cope with it, understand it and most of its quirks) but this doctor hasn't made the same. How do you deal with this? I tend to not respond since I feel it is not worth it. Nothing I will say will sway their way of thinking. I guess I'm tired of trying to convince physicians about something I know, and my family and friends know, is erroneous. I find the more you talk back, the more you fuel this bogus diagnosis. However, I also feel that this makes me less likely to go consult a physician, so I ride things out when maybe I should get checked out. I just don't want to hear one more time if I go to the ER and a nurse sees my HR sky rocket as I sit up tell me: "Why don't you take an Ativan? Maybe that would help?" UGH! Guess this was a question with a rant! Sorry, but it had to come out.

Yes, this is the exact opposite of pooling. I had this for a few weeks last summer, even lying down. My doctor told me that because my BP was too low and my pulse pressure very narrow, my body was shunting the extremities to keep blood where it is most necessary, i.e. vitals organs. My oxygen levels where normal too, so go figure.

Hi Rachel, I'm so sorry you're going through this. I agree with all the others. You should get checked out. Hope things get better soon.

I have experienced this between 5 and 10 times. I also get very cold the tremors/spasms tend to me in my limbs. They contract so strongly that the pain lingers for a long while once it is gone. I also was woken up by those a couple of times and it looked as if I had Parkinson's: my head was bobbling and I had very visible tremors everywhere for a good 30 minutes. What I found bizarre, is that they didn't all stop at once. The right side of my body stopped before the left. Puzzling to say the least. I cannot pinpoint any trigger.

I find this most interesting since my POTS onset coincided with heart failure (resolved within a week's time but not dysautonomia) and some auto antibodies are involved in HF.